MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/20/2014 - 5:01pm
Replies by: Anonymous

I'm getting small bits of information from my mother regarding my father's diagnosis.  His melanoma is now in his lungs so we are waiting on pathology so they can come up w a treatment plan.  Is there a separate support group for ano-rectal melanomas?

Thank you.

 

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Gene_S's picture
Replies 1
Last reply 12/20/2014 - 10:23pm
Replies by: arthurjedi007

Does anyone know how Mark is doing?  He was from Ohio near Akron and was going for a different treatment but I haven't seen a posting from him in a long time and was wondering how he is.

Judy (loving wife of Gene - Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/20/2014 - 9:32am
Replies by: Anonymous

Hello,

I am a Stage 1b patient 10.5 years post diagnosis. About 2 weeks I am having annoying migrating pain in my middle/upper back. It is less prominent in the morning, getiing worse in the evening, and is better/no pain at night.  I may have it between shoulder blades, so I want to streach, then it can move and throb in scapular area, moving to side rib. I can feel from time to time tension/spasm in the upper part. It is not stayng in one spot, but moves around, although sometimes is more prolonged close to medial border of scapular.

I am starting to freak out about it. Could such pain pattern be melanoma-related, coming from spine, bone, or lung  tumor???

 

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jenny22's picture
Replies 2
Last reply 12/20/2014 - 3:47pm
Replies by: BrianP, 5dives

Hi All-I promised myself I would try and take a break and not read so much, but i am having a particulary bad afternoon today.

As I am preparing for another surgery, and then a decision for next setps I find myself reading, and reading and reading....

I am most likley going to participate in a Vaccine trial.  But its so scary and disconcerting to read from some that vaccine trials havent really wokred, nor whons any clear data....only other options are Interfeon or IPI, whcih i am not sure about.

I would welcome any comments on the above, but also had another question.....i've read varying aritcles, abstracts, publications etc about the managment and prognosis of Intransit mets...

I've actually found a few that say, in the absence of LN involvement they have a better prognosis  than overal stage IIIB, and also have read the oppositie that they are worse prognostically.So, are stage IIIBs, equal?

All the Oncologists I've seen (Sloan, NYU, Mt. Sinai, UPENN, and Rutgers) all seem failry encouraging that this is still "beatable" ....or at least that i stand a chance to be hear a good number of years down the road.

I know i am  probably no different than anyone else here, but I can't seem to get that positive attitude just yet, and  still focusing on the negative and the overhwleming fears of what lies ahead.....

I would love to hear anyones thoughts on the IIIB/intransit question as well how to get that postive "mojo" going.

Thanks in advance and best to all.

j

 

 

 

 

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Rose2014's picture
Replies 6
Last reply 12/20/2014 - 10:59am

My husband just had his first IPI (Yervoy) infusion yesterday.  They told him that side effects wouldn't happen for 3 or 4 weeks, but today he has slight flu like symptoms, enough to keep him in bed and no appetite. Maybe he caught a bug from his salad lunch at a restaurant yesterday or dinner, but it seemed like such a coincidence to be one day after treatment, that it seems like it has to be from treatment. When we called the dr office, they were doubtful it could be from the treatment.  Anybody else have side effects within the first day or two of first Yervoy treatment? Thanks for your help.

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Julie in SoCal's picture
Replies 11
Last reply 12/21/2014 - 12:04am

Hi there friends,

It's hard to believe that I started all of this up again a year ago!  Last Christmas was such a mess! My recurrence and my mother's illness just left all of us tired and done.  So done that we skipped Christmas. 

But yesterday I had my 1 year since starting IPI scans and once again they are "perfect", "complete response" and "see you in 6 months".  I still can't quite believe it.  But my Rock Star Doc couldn't even find evidence where the intransit mets were and the biopsy sites are now soft and pliable (as opposed to hard and BB like before).  I am so grateful!

May you have a wonderful holiday season! Merry Christmas!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD

Here's a picture of me and my friends celebrating. I'm in the white shirt and jeans. It is a happy day! 

Oh Happy Day!

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RGal's picture
Replies 4
Last reply 12/20/2014 - 7:04pm
Replies by: Anonymous, RGal, jenny22, yazziemac

I posted the other day about my father. He was first diagnosed w Anorectal  has now returned on his chest wall.  Can anyone recommend a melamoma specialist in nj. He refuses to go to ny as much as I'm trying to convince him to go to Sloan but it's unlikely 

thank you. 

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yazziemac's picture
Replies 1
Last reply 12/20/2014 - 3:04am
Replies by: MattF

Hi all

My husband, Pete, had his gamma knife radiation two days ago and is doing well.  He has been given direction from the radiation team to wean off the dexamethasone over the next couple of weeks.  He was on 12 mg/day in November, went down to 8 mg/day last week, and will cotinue to decrease the dose.  Can you give me some idea of what to expect over this process?  What is normal and what should I be concerned about?  Thanks for your expertise in advance.

Yasmin

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arthurjedi007's picture
Replies 4
Last reply 12/19/2014 - 10:38am
Replies by: arthurjedi007, Bubbles, RJoeyB, Anonymous

I was wondering if anybody has heard how Joe is doing? It's been about 10 days or so since his planned crainiotomy was supposed to happen. Hope he is getting better.

Artie

 

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arthurjedi007's picture
Replies 8
Last reply 12/19/2014 - 5:35pm

I certainly don't understand much of the report but the way the radiation doctor described it the one they radiated has shrank by .1 cm in one dimension and grew .4 cm in both the other dimensions. But he thinks that is probably due to the dead cells being smooshed. The other two that were not treated have pretty much disappeared. I'm really suprised about the untreated ones because one of those was just about .5 cm smaller than the one they treated and was also pushing on the dura. Sooo whohoo again for Keytruda. I got my 11th dose Tuesday with radiation the day before and after so maybe that radiation/immunotherapy synergy will happen for me someday or maybe that's why those are gone I dunno cause I got my pd1 within 26 hours of my last head and lower spine radiation too.

I think I've developed clostrophobia though. I was in the same MRI machine as August but this time I kept choking. I also couldn't stand being in that small space this time. I'm not a big guy and I just barely fit. I was also very hot and by the time it was all over my face was really red. A few times I thought I was going to suffocate in there especially with the choking. I think next time I'll request the big donut. Dunno if that will be better but maybe.

I know we all experience scanxiety and this scan almost drove me crazy. I was able to put it out of my mind pretty much until two days before. Then all the fears hit hard imagining the crazy stuff they could find.

Here's the report. I thought it was very thorough and a well done report. They plan to scan again in 3 months. Last week my Mayo doc called to see how I was doing. He had me send my 11/3 pet/ct so I'll send him this too. It really amazes me how much the Mayo docs care.

Take care all my fellow warriors.

Artie

Findings: On the prior precontrast T1 sagittal images the right paracentral posterior parietal osseous lesion measured about 2.3 cm AP x 2.8 cm craniocaudal. On that study on the postcontrast axial images the mass measured 3.6cm transverse. There is now T1 shortening within the soft tissue components of the lesion both within the cranial vault and within the scalp. This may represent products of hemorrhage in ths individual with melanoma. On the study today I measure it at about 3.2 cm craniocaudal x 2.7 cm AP on the precontrast sagittal images. This does appear to have increased in size. When I measure the transverse dimension on the postcontrast axial images I measured about 3.5cm slightly smaller. There is some susceptibility associated with the lesion. This was also present previously. On the axial images the lesion does appear more discrete than on the prior study. There is destruction of the bone with extension of the mass into the cranial vault and into the scalp.

The lesion is again seen to displace and abut the superior sagittal sinus. The sinus continues to enhance without evidence of adjacent thrombosis.

There were additional osseous lesions in the left frontal and left parietal bone on the prior study. These have improved significantly. There has been virtual resolution. No new areas of FLAIR signal alteration are seen within the calvarium. The cerebellar tonsils are normal in position. The corpus callosum is intact. No discrete area of abnormal signal enhancement is seen in the brain parenchyma. The right calvarial lesion which extends into the cranial vault certainly may involve the dura. The dural venous sinuses enhance.

The ventricles are normal in size. Signal voids are present in the vessels.

Impression:

1 Some increase in the craniocaudal and AP dimensions of the mass as measured on the T1 sagittal images and compared to the prior study from 8/21/2014. Some T1 shortening within the soft tissue components which may represent products of hemorrhage in this individual with melanoma. Of note, the transverse dimensions decreased slightly and the lesion appears slightly more circumscribed on the transaxial images. Continued follow-up is recommended.

2. Virtual resolution of the smaller calvarial lesions seen previously.

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JerryfromFauq's picture
Replies 3
Last reply 12/18/2014 - 11:16pm

My First Christmas in Heaven

This has been posted almost every year that I have been on the MPIP. I came onboard in 2007 and is meant as solace for the Christians whose loved ones have died n the past year..

I'm me, not a statistic. Praying to not be one for years yet.

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Rebecca and Bob's picture
Replies 7
Last reply 12/20/2014 - 11:55pm

My husband had scans this week. 7 years Stage IV, 5 1/2 years NED. We found out he had Stage III melanoma when our two boys were 3  and 1 years old. Then a year later it was found in his lungs and intestine.  It has not been an easy road but hopefully sending this note will give others hope.

This has been the best Christmas news for us, no gift could compare. I don't visit this site as much as I used to but the people and this site helped us so much when my husband was first diagnosed.

Wishing everyone a wonderful Holiday!

Rebecca

 

Believe

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hbecker's picture
Replies 4
Last reply 12/19/2014 - 1:21pm

We went to Johns Hopkins this week for my husband's annual check-up as part of a follow-up study after he participated in a GVAX melanoma vaccine trial. The scan reports all say "no evidence of metastatic disease," so we are celebrating 2 1/2 years post-WLE! This post is an edited version of the one I put on my blog to keep our family and friends up to date.

Since there were no medical issues to discuss, we used some of our time with Dr. Lipson to get an update on melanoma research. He said the most prominent news is the ongoing developments in combination immune therapies, in which researchers are using antibodies that activate the immune system in various combinations. The research shows that the therapies are effective in a number of cancers, including kidney cancer, breast cancer, lung cancer and lymphoma as well as melanoma.

He wasn’t talking about TIL therapy, which I’m pretty sure is likely to be very expensive if they are able to bring it to market – so expensive that sometimes I think of it as the monster that could eat all our money someday. Some researchers are working with therapies that activate the immune system without taking cells out of the body. We can hope that someday this will lead to effective therapies that can be commercialized without the prospect of either being available only to very wealthy patients or bankrupting the rest of us.

Another positive thing about the immune therapy research is that some of the studies include patients with Stage 3 disease. Generally, reseasrchers don't want to study therapies in patients with completely resected melanomas because without a tumor to shrink, it’s hard to tell whether it’s working. As Dr. Lipson said, “in people who don’t have any evidence of disease, you wait … and you wait … and at some point you have to say, ‘Well, this did it.’ [Or not.] Even if you have two groups of people with a thousand patients in each group and you wait five years, it’s a long time for a trial.”

Five years, trial or no, is a long time to wait. And as Dr. Lipson explained, the risk tapers off during that time. It’s not as though you are fresh out of surgery, and you know that the risk of recurrence is highest in the first five years, and then you hit the five-year mark and the risk gone. So what does it mean to be at the half-way point – two and a half years with no evidence of disease? Will it be different in June, with the next set of scans, at the three-year mark?

I think not. Or if so, only to the extent that we’ve learned even better how to live with the uncertainty of being a melanoma survivor. Life goes on, and as long as it does we’ll continue to make the most of each day.

It's a lesson I learned right here on the MPIP. Thanks so much to all of you who have helped!

Hazel

 

blogging at www.hazelbecker.com

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Jsneathen21's picture
Replies 8
Last reply 12/21/2014 - 12:00am
Replies by: Tracey R62, Jsneathen21, Anonymous, SABKLYN, JustMeInCA, MattF

I just learned today I have to have the sentinel node biopsy done... Can any body give me advice on this? As far as what are the side effects? How long is the stay? Or is it outpatient? I would like to know how it's effveted your treatment or outcome thank you so much

 

diagnosed with atypical spitzoid melanoma 

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Thankful_Heart's picture
Replies 3
Last reply 12/19/2014 - 11:06pm

have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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